Tuesday, December 23, 2008

Surgery scheduled for Friday

A lot has happened since I blogged last - all good.  She got out of ICU just after lunch yesterday and was looking soo good!  Better than she's looked all month, in fact!  The doctors all commented on it, as well as the nurses.  We got a nice room when we returned - only slightly smaller than our last room, but a nice view and in some ways a better set up.  As Jessica mentioned, it's right next door to our old room.  We even got Esther's favorite day nurse, Kristen - I found out she requested to have Esther.  She's the nurse who got things going for Esther on Saturday when she really needed it!

Here's Esther in ICU:

Once Esther was settled in her room, I had Daryl bring Jessica over here for a break from the little kids.
Here's the view from our new room - a Winter Wonderland for sure:

Just before we left ICU, I added a bow to her IV:

We played a great game of Nerts - I even won, but only by 2 points!  Then Jessica stayed here with Esther and I went to spend the night with Daryl and the kids.  Dinner was made by "Side by Side" - an outreach from University Presbyterian Church, "to come along side families with seriously ill children".  It was a delicious dinner, and they also had cool crafts for moms and kids!  I got do do one of them, and the kids all got in on the fun!

Then, since Dayton had fallen asleep in the room, I stayed in the room with him and Elizabeth and cleaned/organized the room.  We have chores delegated at home, but it's tough to find new routines that work when away from home and mom isn't around.  Daryl was taking the boys to the hotel during that time - he was pleasantly surprised when he got back!  Then we watched a Chritsmas movie and got the kids tucked in for the night.

I couldn't sleep as for some reason, the "sleep comfort" bed I slept in seemed to send most of the inflation to the foot part of the bed, resulting in indigestion/heartburn and the sensation of being upside-down!  Around midnight, I tried switching to my head at the foot of the bed and it was much better, but I still couldn't get to sleep!  So when Jessica called just before 3 am, I was still awake and ready to get over to be with Esther.  She was having gas pains from starting back on feedings again.  So I cuddled with her and the nurse gave her some gas medication (she's had it before, most of the time), and she settled down for a good sleep, for about an hour.  We had an uneventful morning, Daryl brought Rachel over for games and mom time.

Esther started showing signs of retaining fluids this afternoon, and finally around dinner time, the doctors agreed with me and gave her a dose of Lasix.  For now, they'll give her Lasix by IV as needed until we see what her needs are.  She's been awake most of the day, but very fussy this afternoon.  She had one IV taken out, as well as a circle band aid kind of thing from her cheek, and she also had her feeding tube re-taped during the night.  Then she started sporting some bright red spots and crying like she was in pain.  We gave her Tylenol, and eventually the redness went away.

The middle kids went to a movie "with Dave" - a guy who comes regularly to take kids and teens to movies, it was really fun for the kids.  Daryl had lunch with me and Esther (we got to take her with us, and she love the walk, falling asleep by the time we got there), and then after lunch we were surprised by a visit from my brother Tom!
Here's a great photo of Esther with her Daddy - she was very talkative, and enjoyed telling Daddy all about her day:

He drove all the way from Port Angeles just to see us and bring some Christmas cheer!  He brought two beautiful nativity scenes that are lit from underneath with a changing color light, some chocolate for me, candy for the kids, and a couple books for me to read!  What a great brother, eh??

Daryl came over with ther 4 youngest this evening, as the older kids had signed up for a shopping trip to Northdate mall.  We took them to eat at the cafeteria, which was new and fun for them.  Then we came back to the room.  They hung out watching TV while I got a shower.  Then they headed off for The House.

Oh - and a really cool thing...Esther has discovered her hands! She waves her right hand in front of her face, moving her fingers, watching it with great interest! It's sooo adorable! I got it on videotape today, I was so happy to capture it on film!

Her surgery has been rescheduled for Friday, but right now we don't have a time. I'm feeling really good about the surgery since she's looking so much better!

It's really a balancing act with her though - she's coming off being dehydrated, but if she gets too much fluid, she can easily go into heart failure! So please pray that they can manage her fluids between now and her surgery so she's in great condition for the surgery!

Tomorrow is Christmas Eve, and looks to be a very exciting day, but the cruise was canceled due to weather conditions. But they plan to do all the activites they had planned for the cruise at The House in the kitchen instead, so it will still be a nice afternoon for the kids.

We are planning to get a family photo either tomorrow or on Christmas Day so watch for that here!

Please pray that she will be protected from getting any new bugs between now and then, so it can happen as scheduled, as our reservation at the hotel ends on Saturday!

Thanks for all your comments - that is the best way for me to get a lift in my day!


  1. I am so happy that she is doing better! I am trying to get over to the hospital to see you guys, but the roads have not been working with me at all! I can not even get my car out of the driveway! we tried last night and immediatly got stuck. We are in the middle of a hill so that is not a huge suprise. I am hoping that by Friday I will have no problem. I would like to be with you if you want the added support while she is having surgery. We will keep praying and I will keep trying to get there!

  2. So glad to see that she is improving! She looks like she had a fun day with her family.

  3. Hi Ruth! I have been reading your blog and tracking Esther's progress. Hope things go well for her over Xmas and hope that your whole family all have a great time. I will be thinking of her, esp on Dec 26th, and trying to send healing thoughts, even though I am not praying very much these days.
    This sure will be a memorable Xmas for you.
    It is lovely to see that Esther is making good progress in other ways. Discovering her hands! Wow! a great toy you can never lose!

  4. It's encouraging to hear how all the events of your family during the past week have built some wonderful memories for your family. Although you'd rather have been home in your own house the Lord has something else uniquely planned for you all. I'd imagine that this will be a Christmas season that they will never forget. It's been so neat to see all the various pictures you've posted through the months; your courageous to be so open and sharing of your family. This is wishing you and your family a wonderful joy filled christmas eve and a memorable CHRISTmas day. Blessings

  5. Hi Ruth,
    We are praying daily for you and little Esther. I hope you and your family have a wonderful, God-Filled Merry Christmas!


  6. My children and I are praying for you all daily. We will be especially vigilant from now on, we will include her in each of our prayers. My children are especially praying for your other children as well as they think it would take a lot of bravery to not mind being away from home at christmas time. I know God will be with you! You are very brave Ruth. Keep leaning on God and your family, you will all make it through this.

  7. I have been reading every day, and am so glad that things are turning around. I wish that I lived closer so that I could go over there and just snuggle Esther. I will continue to follow her on her journey and if there is ever anything that I can do to help, just let me know. I will be keeping all of you in my prayers.
    Thank you for keeping us updated daily. I know that it is one more thing to do in your daily life, but it allows that special baby to touch our lives; although I don't know Esther, she has left such an imprint on my heart!